First steps
Finding out that your child has a sight problem can feel like a ride on an emotional roller coaster. There's no "normal" response - different people respond in different ways. Here are some of the first steps you might take.
Emotions
At different times, you may feel disbelief, anger, sadness, worry and frustration in addition to the joys and pleasures that your child gives you. Different feelings come and go and sometimes catch up with you when you least expect it. All the while your child's need for food, love, warmth and security continue to demand your energy, care and attention.
When an older child loses their sight, it may take a long time to adjust. Remember that it's possible to become independent again - you might like to talk to others about their experiences.
What you can do
Get informed
A good first step is to make sure you have access to the information and support that is available. Our Eye health section has articles about common eye conditions and advice on what to expect from eye clinics and health professionals. VI Scotland also has medical information about a number of eye conditions, aimed at parents.
You can prepare for visiting a specialist by reading our questions to ask at the eye clinic
Starting Point: A guide for parents whose child has a vision impairment
"We wanted a map of the next few years. We really wanted to know what do we do next?" (Parent)
Starting Point introduces parents to the help and support you may need as a parent of a child with a vision impairment when your baby is first diagnosed. You can visit the online support guide or, if you would prefer to talk to someone, call National Blind Children's Society (NBCS) Helpline.
Visit: www.nbcs.org.uk/startingpoint
Call: NBCS Helpline 0800 781 1444 (Monday-Friday, 9am-5pm).
Rare conditions
If your child has a rare syndrome or a particular condition which may affect more than their vision, get in touch with Contact a Family (CAF). CAF provides ongoing support to rare eye condition groups and to answer enquiries on eye conditions.
An A-Z of eye conditions is available on the Contact a Family Website. You can view up to five conditions for free in a six-month period online. Families with a disabled child who want to view more than five conditions should ring the contact a family helpline on 0808 808 3555 (Mon-Fri).
You can also buy the Contact a Family Directory which is a guide to medical conditions, disabilities and support contains patient friendly information for children and adults with disabilities, serious health conditions and rare disorders.
Professionals who would like unlimited access to Directory information can either pay for a one-year online subscription, which is £15 per year plus VAT or buy a hard copy of the directory, which is £40 inc p&p.
Both of these items can be ordered from the CAF shop.
Talk about how you feel
Talking to friends or family can sometimes be a useful first step. There may also be a support group in your area.
Join our Parents' Place forum to talk to other parents with sight problems.
If your emotions are causing you difficulties in any way, contact our Emotional Support Service, which offers confidential support, information and counselling.
Find a support group
See our short list of support groups for rare eye conditions.
Contact a Family can put you in touch with support groups for people and families affected by particular eye conditions such as albinism, retinoblastoma, nystagmus or retinitis pigmentosa.
Local support
Action for Blind People has a network of local Children, Young People and Family (CYPF) Coordinators, who organise family weekends, family days, actionnaires multi-activity clubs and activity weeks.
There are many local societies for people who have a visual impairment. It is worth getting in touch with them to find out if they have any activities for children and families. Phone the RNIB Helpline on 0303 123 9999 or search the Sightline Directory.
Support from teachers and organisations
See our Who's who guide to find out what the different professionals do and how they can help.
Specialist teachers
Your Local Authority should have at least one Qualified Teacher of Visually Impaired children (QTVI) to work with you and your child both at home and at school. These are teachers who have additional qualifications and experience in working with blind and partially sighted children. See living and learning which gives you lots of information about school life and support for your child.
At an early stage, ask your Local Authority to put you in contact with a QTVI. They will support you and your child as soon as an eye condition is suspected or diagnosed. If you have difficulty getting help, or need the details of the specialist teacher in your area, contact the RNIB Helpline on 0303 123 9999.